It's Official!

[Zanni2]

The results of my biopsy were positive with "Chronic Cystitis." My urologist started me on Elmiron instillations today. This is supposed to help coat the bladder and it will take a couple months or more to work so I was told to be patient ;) I can also take Ibuprofen when needed. I'll be going through treatments once a week for about a month, then the nurse will show me how to treat myself at home. I was told that if this form of Elmiron works for me, I'll have to take it for the rest of my life.

Regarding my pelvic problem, the pelvic xray mentioned something about extra bone tissue (2cm) on my right side? :rolleyes: The doctor asked me if I ever had any injuries or falls. I had two in my life. When I was eight I slipped backwards on my lower back on a slip-and-side thing and had the wind knocked out of me! :yikes: When I was 16 I fell forward in a shoe store. My brother laughed like crazy! :biglaugh: I may have to have more tests for the pelvic area. My urologist is going to contact the radiologist who read the xrays.

For now, it's just Elmiron treatments. Have anyone of you ever tried Elmiron in the form of instillations? If so, how did you do?

Zanni2 :angel:

[kelly McC]

I have not tried the elmiron installation yet. My doctor suggested it yesterday. I told her I would consider it.She said she has quit a few patients who could not take it so they install it. I was not aware till yesterday that was a option.
Take care and best wishes,
Kelly

[JessicainArkans]

I had Elmeron, Solucortef, Marcain( for pain) and the DMSO.
I went through a series of 5 or 6 . They seemed to a help a bit but not enough that I would do it again, I had horrible rebound effects that left me in bed, nearly dead with pain, this lasted two days after the installations but the other 5 days were better than before having the installations.
Will you be taking Elmeron oraly? or only in the installation format?
What other meds have you tried?
What are your main symptoms?
Qustion and grilling time.

Much hope for your health and recovery:kiss:

Jessica Day:thumbsup:

[Dixiefireball]

i take the heparin and marcaine cocktail which has done wonder for me i take it daily at home. I can't take it when i have a UTI which i still have right now and on leviquin and i agree with the long weekend i have to wait until tuesday and suffer longer because of it.
if things get to bad having to wait please call your doctor and if that dont help go to the er for treatment until the doctor office opens back up.
sending you hugs and prayers
Rhonda

[rachelm]

Zanni,

Did your dr. say Chronic cystistis or chronic interstitial cystistis? I always thought cystitis was the same thing as a UTI or bladder infection. In fact dr. in the ER have thought that because IC has the word cystitis in it that it is in fact an infection which isn't the case.

It sounds like you've got a good dr. who is willing to try new treatments. I am only on the oral Elmiron and it took me about 4 months before I noticed a difference. I don't always think that it does much for me now but when I go off of it I do start to have more bladder burn. For that reason I've continued the oral treatments. I also do Heparin/ marciane / bisodium carbonate instilations at the dr. office when I'm flaring and it seems to help the burning for about 8 hours. For me the other IC symptoms I have like pelvic pain and urgency/retention don't respond to the instillations so I only use it for burning. The only real problems I'm having now are caused from a nasty UTI and I know I just have to wait it out with the antibiodic and pyridium. I am definitely interested in learning more about the Elmiron instillations so that when I start flaring and need to try something new it may be an option. Let us know how you are doing on them.

Rachel

[Zanni2]

Thank you everyone for your comments. Because the redness in the bladder didn't appear until it was distended fully, the doctor does believe I have IC. So far the Elmiron instillations at least agree with me. They don't irritate my bladder more like DMSO did! That was awful stuff! :yikes: The Elmiron might be helping a little but it's too soon to tell. I've only had two treatments. In about a month I'll learn how to give myself treatments at home.

I wasn't on the boards last week because I had a computer virus which made me unable to surf the internet. Only my e-mail service was working. It appears to be OK now. My brother, who's a computer expert, did something to clean out the virus.

I'll keep you updated on how I'm doing. Good luck to you also.

Zanni2 :angel: :grouphug:

[rachelm]

Zanni,

I'm glad the Elmiron ins't hurting you and hopefully you'll start to see a benefit in a month or so. It does take the oral form 2-3 months at least before noticing a difference. I've found that the marcaine in my instillations is helpful in soothing the bladder burn for about 8-12 hours in a bad flare. I don't know if you can mix marcaine with Elmiron but it might be worth asking. Also I found that using a bit of lidicaine jelly right before cathing and putting it just inside the urethra helps numb me and keeps me from hurting as much. I have a very sensitive urethra so I have to be carefull about it getting irritated and bleeding. I wish you the best with your instillations. Let us know how you're doing as you have more done.

Rachel

[Zanni2]

I think the nurse must have given me a stronger dose of Elmiron. This time soon after I left the doctor's office, I had an intense urge to urinate that drove me nuts! :yikes: When I had the first two treatments, I was able to hold the medicine comfortably for an hour. But this time, I could barely stand to hold it for 35 or 40 minutes! Is this a typical reaction? Tomorrow I'm going for treatment #4. I'll ask the nurse if the dose can be lowered! I flared so bad last week that I had to call in sick from work the next day! :mad: If by the end of this month, I'm still having trouble with the instillations, I'm going to ask the urologist if there are any other treatments available for IC other than bladder instillations!

Also, I'm hesitant to learn how to treat myself at home. Knowing me, I won't find the urinary opening since I can't see "down there" or I'll infect myself with the darn catheter! :bonk: I just don't like the idea of sticking things inside myself! That's gotta be risky. Anyone else feel this way?

Zanni2 :dizzy:

[ICNDonna]

I know it's a scary thought, but with a mirror strategically placed, it's easy to see the urethra --- and I find cathing myself is less uncomfortable than having someone else do it.

Warm encouraging hugs,
Donna

[rachelm]

Zanni,

I felt exactly like you initially so I totally understand your aversion to self-cathing. I have severe retention at times and so I finally learned how to do it this year. My nurse gave me a mirror and showed me how to look for the urethra. I tried for hours last year unsuccesfully and it kept slipping and getting in the wrong place. I would tense up and then I couldn't get it right. I learned that while I had a picture of where it should be my urethra is much closer to my vagina than most peoples so that was causing not only the difficulty for self-cathing but also my recurring UTI's. Even in a completely sterile dr. office I am at risk for UTI's when I'm doing instillations or any form of cathing. So now I just take a low dose antibiodic when I'm having to cath. I was so desperate when the nurse showed me because I couldn't hardly walk or stand up straight due to the amound of urine I was retaining. I felt much more independent when I could stay at home and empty my bladder after I learned how to do the self-cath. The first time I did it at home I propped myself up with my knees bent and a stand up mirror in place just as I had been positioned in the dr. office. I felt like a kid that had finally learned how to ride a bike. I know that sounds nuts but I could relieve myself so I was no longer hurting from retention for hours until I could get to the dr. office.

After a while I learned how to feel for it and I was able to self-cath in a public bathroom if I needed to and I was pretty quick about it. I still get UTI's when I do it often so I take precautions.

I also used a swab of betadine to clean the area which helped prevent infection but it also seems to make the urethra pop out so it's easier to see. For me what allowed me to finally be able to do it was using a stand up mirror so my hands were free. If you don't have one you can put a flat one on the toilette with the lid closed and try to position yourself over it so your hands are free. Many people don't have as much trouble as I did though so it may be a sinch for you. I think most people are able to do it blind though once they get a feel for it.

I wish my dr. would let me do my instilations at home but due to one of the ingredients in the coctail he needs to monitor the bodies absorbtion of the marcaine that can cause respritory problems in rare cases when the body takes it in too quickly. I have begged him to send it home with me but he won't. Oh well at least I can relieve myself on my own when it's a problem.

If you do have to do it at home I would reccomend a self-lubricated catheter such as the lofric that has a saline lube throughout it. They are slippery but are much less tramatic and don't hurt going in or coming out.

I hope you start to have easier instilations. Good luck!

Rachel

[Zanni2]

Today's instillation was better. I think the Elmiron might be helping a little. After the two-day flare each time, I notice an improvement in symptoms. It's only been five weeks so it's a bit soon to tell, but I'll stick with it at least another month. Thanks for all your replies.

Zanni2:angel: :thumbsup: